I want to share our journey with Penelope whom has been diagnosed with a Complete Atrioventricular Canal Defect (CAVC) of the heart and Down Syndrome.
It was roughly seven months ago that I received a phone call from my wife with news regarding Penelope that would forever change our family
During that call my wife was sobbing, emotional and hard to understand. My heart sank and without knowing what the issues were – – I felt helpless.
Already knowing that Penelope had enlarged ventricles in her brain which could be a reason for concern; I was now faced with a diagnosis of down syndrome following blood work that all but confirmed the news that I feared.
Shortly after meeting with the genetics doctor to officially provide the diagnosis – Allison and I were asked to make a trip to a pediatric cardiologist to further investigate what could be a reason for concern with Penelope’s heart.
In a room that was quiet enough to hear a pin drop and after what seemed to be hours of ultrasound pictures, my wife and I were asked to meet in a boardroom with the doctor. We sat around a table waiting for someone to let us know what the outcome of the ultrasound was. However, within the next few moments we wouldn’t be able to grasp what the gravity of the situation would become. As doctors, nurses, social workers and observers piled into the room – we started to get it.
It was at that time that we learned that Penelope has a complete atrioventricular canal (CAVC) defect of the heart. I was numb – but knew I needed to understand specifically what we were up against. Pictures of the defect were presented, explanations were given and condolences as well – but it became one giant blur of information. The doctors asked – are there any questions? The only thing I wanted to know was how to make it right, how do I fix this for our child?
“It will not heal on it’s own and it will require an invasive surgery of repairing, followed by several weeks of recovery” one of the doctors commented. My wife and I thanked the doctors and walked out of the hospital in shock.
It’s has been 6 months of processing and understanding fully the details assocaited with the defect. While it has yet to get any easier to wrap our heads around, Penelope has been in our lives for 3 months – and she is a fighter! Meeting or beating all of the doctors expectations thus far! We are very proud of her and so blessed to have her in our lives – especially those smiles!
On October 11th and at fours months of age; Penelope will undergo open heart surgery to repair her heart and will be complete several weeks of recovery. We are confident in our medical team that will be supporting us through the surgery and especially greatful for the love and support that we have received the days leading up to the surgery.
I have encountered many that have asked how they can support “Team Sweet Pea” and we are looking for prayers, notes/letters to our family and financial support for the medical bills that will follow.
Below is a brief description of the defect:
Atrioventricular (AV) canal defect is a large hole in the center of the heart. It’s located where the wall (septum) between the upper chambers (atria) joins the wall between the lower chambers (ventricles). This septal defect involves both upper and lower chambers.
A child with AV canal defect may breathe faster and harder than normal. Infants may have trouble feeding and growing at a normal rate. High pressure may occur in the blood vessels in the lungs because more blood than normal is being pumped there. Over time this causes permanent damage to the lung blood vessels.
Lastly, I want to thank anyone that has said a prayer (keep them coming), donated to Down Syndrome Awareness or helped in any way with soften the blow of the mounting medical expenses. We truly appreciate your love and support!
The Seabolt Family